Government funding for epilepsy

South Australia and the Northern Territory are the only states in Australia that do not receive Government funding to support children and families living with epilepsy. 61,000 people live with epilepsy in South Australia and 38,000 in the Northern Territory. The Epilepsy Centre continues to provide support and services to those affected funded solely by private donations.

Epilepsy can be a devastating condition to manage and the support The Epilepsy Centre provides to the community is an absolute necessity.

The suicide rate among youth living with epilepsy is 25% higher than the general population, due to difficulties in securing employment, maintaining friendships and holding a driver’s license. It is a life of uncertainty, confusion, isolation and embarrassment which no one should have to endure. Epilepsy can affect anyone at any age.

Epilepsy is not just falling to the ground and shaking. A seizure can kill.

The Epilepsy Centre is a professional organisation committed to providing quality services to people living with epilepsy and improving community awareness and attitudes throughout South Australia and the Northern Territory. The team at The Epilepsy Centre have been helping people since for over 40 years and we work continuously to raise awareness of epilepsy in the community to reduce stigma and create a more welcoming and inclusive society.

Our key services include:

Counselling

Advocacy

Epilepsy Management Support

Care Plan Development

NDIS Support

Home and Residential Care Visits

Employment Support

Resources

Workshops

Clinics

Epilepsy Training for Families, Schools and Workplace

In hospital Support

Collaboration and networking with other agencies

Risk Assessments

Epilepsy First Aid Training

Emergency Medication Training

Annual Camps

Epilepsy Education for - Schools, Workplaces, Sports Groups, Disability and Support Workers, Community Organisations, Family and Friends

The cost of service delivery is incredibly high yet we strive to go above and beyond to supply children and families with necessary medical equipment designed to protect people from their seizures. For over two years The Epilepsy Centre has donated almost 60 Seizure Monitors to children in need. These monitors are placed on the child's bed and can detect movements similar to seizures, which then sounds a loud alarm to alert loved ones. Each seizure monitor costs $1000, which most families can not afford. We have also donated equipment such as Oximeters, life jackets, ice vests, helmets and specially designed wheel chairs.

Our mission and vision is to improve in all respects the welfare of people with epilepsy and their families in South Australia and The Northern Territory.

We aim to:

Educate the public to accept persons with epilepsy as equal citizens and encourage greater public understanding

Remove any discrimination from persons with epilepsy and/or their families

Advise and help persons with epilepsy, and their families

Represent persons with epilepsy in being accepted with education authorities and all employer organisations

Promote and provide information on epilepsy by way of pamphlets, advertising, films, articles, discussion and lectures to public and professional groups and the community

Support research programmes and seminars into medical and social aspects of epilepsy

Government funding would enable us to employ additional full-time nurses, social workers and counsellors to manage the enormous workload. These workers would help reduce hospital admissions, give families and individuals much needed support, train schools and workplaces and help improve community understanding - effectively ending the appalling stigma associated with seizures.

It's time to recognise that epilepsy is indeed a disability and to provide much-needed funding for The Epilepsy Centre.

Epilepsy is a well-known and relatively common medical disorder. In fact, we suspect that you know or know of someone with epilepsy. Epilepsy is a common medical and social disorder with unique characteristics. It is a neurological disorder that manifests itself as fits or seizures due to abnormal electrical activity in the brain. The seizures can be almost unrecognisable but may also present with sudden recurrent episodes of loss of consciousness, sensory disturbances and convulsions.

The World Health Organisation acknowledges epilepsy as one of the most common neurological disorders in the world, affecting more than 70 million people worldwide and about 61,000 people in South Australia alone. Epilepsy does not discriminate. Whilst the highest incidence of diagnosis is in infants and the elderly, it in fact affects all ages and sexes. Although there are many known causes that include genetic, environmental and lifestyle factors, it is a condition that affects each individual very differently. The common factor that every person living with epilepsy shares in South Australia is that they are not a priority of this state government.Living with epilepsy carries many negative social consequences. Many people are under the misguided notion that those living with epilepsy suffer a mental illness or are to be feared in case they suffer a severe seizure. This is particularly difficult for children living with epilepsy. The impact of epilepsy on children can affect academic achievement and behavioural and emotional adjustment. Teenage years are often plagued with the loss of independence and the inability to gain a driver's licence. It can also affect the ability of a young person to gain and maintain employment and training.

Sadly, due to the psychological and physiological effects of epilepsy, the suicide rate of young people living with epilepsy is much higher than in the general population. Epilepsy is a disabling condition. Federally, the Department of Social Services recognises epilepsy as a disability when it cannot be controlled with medication. Every part of your life and that of your family is impacted when you are living with epilepsy.

I would like to share a story from a client of The Epilepsy Centre with you. In the words of Vikki:

"It is one of the hardest things to put into words, but the best way I can explain to someone else what it is like to live with epilepsy is this…it's 2am, you are in a deep sleep and you are ripped out by the shrill sound of the seizure alarm going off. It's a sound that means our son is unconscious and having a seizure, so we not only have to get up, but be alert and function well enough to be able to get to him immediately and get him into the recovery position. It's the same sound that represents a possible ride in the ambulance if the seizure is what we call 'a big one' and requires the rescue medication.It is the sound that could mean we will get to our son and find him not breathing. This can happen more than once a night. It is a sound that I hate. Our family has been on this epilepsy journey now for almost 7 years, and through out that entire time, we have never gained any type of seizure control. Our son has what is known as refractory or uncontrolled epilepsy. We have tried and failed around 8 different drugs, all of which have had awful side effects, some worse than the seizures themselves. We battle daily with the stigma surrounding this condition, and the complete lack of awareness and understanding of the general public, and the part that [affects] our son the most, the lack of awareness and support from our education system.Our son struggles to get through a full day of school, he is having multiple seizures daily, this [affects] everything from memory, coordination, ability to concentrate, to be able to interact and play with his peers, some seizures leave him unable to talk … daily in the classroom, [and he is let down] by a system that fails to recognise the condition itself. As a parent, I struggle with the knowledge and the very real possibility that is sudden unexplained death in epilepsy…I struggle with my son growing up with this condition without the adequate support he will need to navigate adolescence and the journey into the workforce without awareness and support.I struggle with the prospect of my son possibly not being able to drive, not being able to live alone, and not being with someone at all times that can render medical attention and rescue medication when he needs it. As a parent of a child with uncontrolled epilepsy, I am afraid of what the future holds, and I am tired of the constant battles and having to fight for my son."

Vikki and her family are known to The Epilepsy Centre in South Australia, but The Epilepsy Centre can only do so much to help with limited resources available to it. The Epilepsy Centre is the major provider of neurological community support for people in South Australia. Since 1976, the Epilepsy Centre has had the mission to improve the welfare of those affected by epilepsy of those in South Australia and the Northern Territory.The major source of funding for The Epilepsy Centre is a call centre in Prospect which telemarkets lotteries and donation campaigns. The Epilepsy Centre actively seeks other financial support in order to provide services for those living with epilepsy. With the money raised from these efforts, The Epilepsy Centre is only able to employ one registered and one social worker part-time for three days a week.

For 61,000 South Australians, the Epilepsy Centre is available to provide a service of on registered nurse and one social worker part-time for three days a week. That is two part-time staff members per week, for 61,000 South Australians. I commend the Epilepsy Centre for the work they do with such limited resources. I do condemn the state government for its failure to provide The Epilepsy Centre with any government funding—not one single dollar. The Epilepsy Centre, the major provider of community support for individuals and their families suffering from epilepsy, does not receive one dollar in direct state government funding.It is sad how far behind South Australia is compared with other states and jurisdictions. In other parts of Australia, not only are the services much better and better funded, of course, but their governments recognise that primary care for people living with epilepsy is an investment in public health funding. They provide more treatment options, more support and more services.In contrast, Victorian families benefit from a range of services thanks to state government funding. The Victorian epilepsy foundation receives about $1 million per year to fund a large range of services to individuals and their families. The Epilepsy Centre of South Australia seeks to provide exactly the same services but, without government funding, it is simply unable to do so. South Australians living with epilepsy deserve better.

As I mentioned earlier, epilepsy is recognised as a disability by the federal Department of Social Services when it cannot be controlled with medication, but the state government is the only state government in Australia that does not recognise epilepsy as a disability. Recognising epilepsy as a disability would give those living with epilepsy access to additional support services through the NDIS, access that would provide much relief to families of school-age children who live with epilepsy.

As the heart-wrenching story above demonstrates, South Australian families suffer with sleepless nights, fear of the unknown and an inability to work full time to care for themselves and their children. The lost days of school due to seizures puts children at a big disadvantage. NDIS funding could help them keep up at school. Not only would families be assisted if epilepsy were named a disability in keeping with every other state, but also it would enable The Epilepsy Centre to raise awareness and fundraise at different levels.

Funding dollars are hard to find these days, as we all know. The Epilepsy Centre operates an excellent service through its limited fundraising and sponsorship work, but recognising epilepsy as a disability would enable the organisation to help so many more individuals and families.I urge the SA government to provide direct funding to The Epilepsy Centre and I urge the SA government to recognise epilepsy as a disability to enable access to the NDIS and to help The Epilepsy Centre to better attract corporate sponsorship. The benefits of improving the resources available to The Epilepsy Centre would be enormous, not just for individuals and their families who live with epilepsy but also for the state's health budget.

We are all too aware of the strain on South Australia's health system with hospital admissions above capacity, crowded emergency departments and the forced ramping of ambulance services at our suburban hospitals. But rates of hospital admissions could be reduced through greater attention to, and focus on, preventative care. There is a strong relationship between the quality of coordinated primary care in epilepsy management and the reduction of emergency visits. However, improvement can only be achieved through better health literacy and self-management amongst individuals living with epilepsy, increased regularity of GP check-ups and producing patient action plans.Funding these types of programs would actually help reduce health expenditure in the long term in South Australia by, of course, minimising the cost of hospital admissions. I do acknowledge that not all hospitalisations for seizures are preventable, with 30 to 40 per cent of recurring seizures resistant to current treatment options. These seizures pose serious health consequences and can result in permanent brain damage or mortality. Under no circumstances can these situations be treated outside of hospitals' expert care.

As South Australia plans for a larger ageing population and changing lifestyle factors, which have increased demand for healthcare services, primary care for conditions such as epilepsy have never been so important. It is vitally important that the South Australian government takes a new approach, a caring approach, to preventative health measures in relation to epilepsy in this state. It will save time, it will save money, and it will save a lot of heartache. To meet the current demand, The Epilepsy Centre needs three full-time registered nurses and two full-time social workers.

These workers would help reduce hospital admissions, give families and individuals much needed support and help improve community understanding. I hope in time the state government can meet these needs. Please consider recognising that epilepsy is indeed a disability and provide much-needed funding for The Epilepsy Centre.